Navigating Complex Systems

Individual and Family ExperiencesDr. Crystal Dieleman Dalhousie University

Dr. Jean Hughes Halifax, Canada

Robin Campbell .

Valerie Hodge .

Understanding how social determinants of health affect the criminalization of people with mental health problems

The Team Dr. Crystal Dieleman (Principal Investigator), School of

Occupational Therapy, Dalhousie University, Canada Dr. Jean Hughes (Co-Principal Investigator), School of

Nursing, Dalhousie University, Canada Archie Kaiser, Schulich School of Law, Dalhousie

University Dr. Linda Bayers, Self Help Connection, Nova Scotia,

Canada Gail Gardiner, Elizabeth Fry Society of Mainland Nova

Scotia, Canada Joan Jessome, Nova Scotia General Employees Union Robin Campbell, Project Coordinator, Hope Not Jail Valerie Hodge, Research Assistant, Hope Not Jail Dan Peladeau, Research Assistant, Hope Not Jail

Methods

Community based action research

Semi-structured interviews with individuals who have mental health problems and involvement in the criminal justice system

Semi-structured interviews with family members of such individuals

Focus groups with key stakeholders from multiple sectors Stakeholder forum for consideration , and development ,

of strategic action plans

Participants

Individuals (n=33) Family (n=13) Family spoken about (n=13)

18 men 2 men 10 men

15 women 11 women 3 women

~ age 35 years (19-60) ~ age 39.5 (18-59) ~ age 35.5 (21-74)

Findings

Navigating Complex Systems

Finding your way through any service that is provided to an individual by a governmental or

non-governmental agency.

Individual experiences

Family experiences

Individual – Positive Experiences

1. Specific program or service experiences

“I’d definitely say that the Mobile Health Crisis saved my life really. So I really am thankful. They’re wonderful. I didn’t want them to come at the time. You know, I tried everything, Oh, no, I’m all right… But yeah, I really do

believe that they saved me.”

“Well, after I was released from the different hospitals. I had been at the short stay and the hospital for the 5-year stint pretty much. Like in and out for 5 years. I

went to my family doctor, my GP, and he really helped me with detoxing off of all those medications.

Individual – Positive Experiences

2. Community based support

“In the last 6 months, I’ve been using, I still go through a street health programme or something of that sort. And I’ve been using the dental clinic through the Community Health Clinic. And I go to the Community Health Clinic to

see a doctor there.”

“Well, I remember I was out of it and in the courthouse. Yeah, the courthouse. And someone came around with pamphlets. I don't know if it was the society for women

who have been in corrections or what. But there was some compassion that I felt.”

Family – Positive Experiences

1. Sense of community belonging

“Well, you know, when he came out of jail, even though as horrible as it was in jail, he came out feeling that he’d been part of a community there. He had a community sense. So at first he wasn’t really scared to go back to jail because he’d had people looking out

for his back. And, you know, kind of like an atmosphere of really bad in one sense but in another sense, there was a little bit of attention. He got the

attention he needed.”

Family – Positive Experiences

2. Incarceration as access point to mental health care

“Unfortunately the anxiety had to go up so high in jail before he got treated, you know. If he could have got treated before going to jail, it might have helped him.”

“A psychiatrist, he has never been seen by a psychiatrist, only since incarceration. I always felt

that he should have been.”

Individual – Negative Experiences

1. Credibility of services / service providers

“The last therapist I had was awful. Because I had sleep apnea and I was sleeping through my

appointments, she dropped me.”

“Not getting the information that I was always asking the doctors. Always saying like why am I taking this? And my appointments were 10 minutes long, and she

made sure of it. And would say, "You have to book another appointment." Just those are things that

frustrated me, I remember.”

Individual – Negative Experiences

2. Short-term solutions

“They were only just trying to get me to stop using drugs. It’s kind of one-sided. If you’re using it for your problems, and nobody is wanting to take care of your problems, they just want to take care of what you’re using to cure them problems rather than kind of relate and get an inner balance to it.”

“I didn’t know what was out there to help me. Nobody was really doing anything. And they were quick to give me meds instead of even looking at something. It’s like I could walk into a general hospital and they’d come with a Pez dispenser…”

Individual – Negative Experiences

3. Disconnected from services/service providers

“Then I went to court for an assault or whatever, and then I wasn't allowed to see him anymore. Which really was hard on me because I got to a point that every 2 weeks, I was going to see him and we really hit it off. And he actually changed my outlook. And it was a big …To me, it was a big difference. But because he works for, I guess, the justice system or through the justice system somehow… They didn't give me a reason.”

“Once I turned 18, I couldn't see that lady no more. So she referred me to somebody. And me and him didn’t click, and I just kind of dropped the ball on it. And I started getting worse off.

Individual – Negative Experiences

4. Impact of environment

“They put me on what they call I can’t remember now - a holding bed or It doesn’t really matter. But where For I think it was 24 hours or 48 hours that I was not allowed to leave my room. You have no Your clothes are gone. Everything is. All your belongings. There’s nothing in the bedroom but a bed basically. And so of course I didn’t take that very well.”

“Well, you’re paranoid, you’re claustrophobic constantly. You’re jammed in a dirty cell with maybe 30 other inmates. It’s horrible living conditions. The food is cold. Nobody cares. And I got stabbed there… Mental health is paranoia through the roof. Everywhere I looked, I couldn't even like… Most of the times, my back was against a wall because I was worried about someone coming up behind me.

Individual – Negative Experiences

5. System / program flaws

“You handed me the Mobile Crisis thing, and I just realized when you handed it to me… And I remember everyone would give me this number. And finally the first time I ever tried to call it, they didn’t come to town.”

“And you know, like trying to get information from them was like pulling teeth.”

Family – Negative Exeriences

1. Lack of information

“But we didn’t realize or we didn’t know that there is another disability branch in Community Services

which is Disability Community Services. Nobody ever told us that there was a Disability Community

Services.”

“Like going in the hospital, no one knows what is going on, like hard to get information because of the confidentiality stuff… I think she was 20 by then or

just around 20.”

Family – Negative Experiences

2. Lack of communication

“And the only time that I think she ever had a doctor who really talked to us as her family was just in the time leading up to when she went into the forensic

hospital.”

“And at one point, you know, one person even told me, Well, you have to call and you have to ask for this

person because we’re not to give you our names or anything.”

Family – Negative Experiences

3. Advocating for family

“I told him, I said, you know, you’re the same doctor years ago that I came to. I don't know what you guys are waiting for but you need to do something today. Like today, not tomorrow. He came down here on his own. So as far as I’m concerned, it’s a plea for help.”

“Yes, she sees a psychiatrist once every 6 months or more often when I call and scream and yell. Like when

I start to go crazy that's when he gets her in.”

Family – Negative Experiences

4. Reactive rather than proactive

“The first time they wouldn't accept him because he didn’t have a diagnosis.”

“You ain’t never seeing a psychiatrist unless you try to kill yourself. Which is how I finally got to see one.

Like it was just hoops.”

Family – Negative Experiences5. System / program flaws

“I was being very pleasant and all but I was like, okay, so how is [my son] doing today? Like did he get his meds today? You

know, whatever. But it was through that process, you know, the woman, she says… ‘There’s only 3 of us here. We’re run off our feet. I’ve got, you know, 10 more to do. And we don't have the

resources to do the job that we are given to do’… That is where I learned that over at [the health authority] they’re completely

separate from us. You know, they have their rules and procedures and policies. We have our rules and procedures and policies. And

never the twain shall meet.”

“And nobody wants to have the difficult case because over here, we've got Addictions and then, "Oh, well, we can't handle her."

So they just send her over to Mental Health.

Take Home Messages

Individuals are most frustrated with immediate experiences – quality of care, personal safety, continuity – getting and keeping good service providers

Individuals’ positive experiences were connected to specific service providers – champions

Family members are most frustrated with trying to access services when their loved ones need it – identifying appropriate services, early intervention, timely access

Family members’ positive experiences are related to access to appropriate services

Take Home Messages

Overwhelmingly more negative experiences in navigating systems than positive for both individuals and families

Despite most mental health strategies emphasizing early identification and intervention, people often reach a state of desperation before achieving access to services

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